Starting Trikafta – A Life-Changing Pill

A few minutes ago, I started what I hope to be a new beginning. I started Trikafta, the first CFTR protein modulator that I have been able to take. It’s hard to explain my feelings when I swallowed that first pill, but I will do my best. 

I take 40 pills a day, 280 a week and nearly 15,000 a year yet this pill is more significant than any of them. I am very nervous because I know the first few days will be rough as this is called “The Purge.” My mucus will likely thin and I’ll deal with some side effects so if you see me and I look like death just know that it’s part of how this works. I liken it to going to Houston and watching my Falcons blow a 28-3 lead in the Super Bowl. I didn’t look very well after that either. I’m not sure I ever recovered to be honest but I digress. 

I know that the potential life-changing results far outweigh the risk of side effects so I’m now more excited than nervous regarding taking Trikafta. To understand how Trikafta works, I’ll try to explain in layman’s terms. My chlorides all my life have not been able to come to the surface because they were blocked because I have 2 gene mutations (Delta F508 and a nonsense or stop mutation called the W1282X) that screw up the salt and water content in my body and therefore has been causing mucus to thicken in my lungs as well as other issues with my digestive system and sinuses. This new drug will allow the chlorides to come to the surface and virtually correct this. This is by no means a cure but it would drastically help. 

As I sit here at my kitchen table, I think of my sister Wendy, people like Claire Wineland, Leann Ott and those who would have loved the opportunity to take this drug. I’ve lost a lot of peers over the years, probably more than most people lose over their first five decades of life, likely more than most people experience over a lifetime. I dedicate this first pill to them. Thank you for paving the way for so many of us. All of you will always be CF Warriors. This disease never beat any of you nor did it dampen your spirits. I also want to thank everyone who has donated to Wish for Wendy over the last two decades. Thank you for making a difference for me and the tens of thousands of others. A lot of philanthropies can’t necessarily prove that your money is going somewhere. This morning that’s exactly what I did. Finally, I want to thank the CF Foundation, Vertex Pharmaceuticals and the research teams over the years for helping to discover this game-changer. I will never be able to thank any of you enough. 

Most of my peers who have started this drug have seen immediate results either with their lungs, their digestive systems or their sinuses and in some cases all three. I hope to as well but I won’t put added pressure on myself. All my life, I’ve taken pills in order to avoid getting worse. I never thought I could just take a pill and get better. That all changed on October 21^st when I learned of the drug’s FDA approval.

Finally, I want the 10% of people whether under 12 or with a different genotype or in a country with limited drug access or just not able to benefit from this drug because of some procedure to know that this in no way means that we have forgotten about you. I have been in your shoes when I was not able to try the other protein modulators: Kalydeco, Orkambi or Symdeko. We must continue to raise funds and awareness so that EVERYONE gets a breakthrough drug and so that one day each of us can find the one thing that we all so desperately want: A CURE!

Let the Trikafta experience begin. I hope that not only will this drug help me but that my liver and the rest of my body will be able to sustain their strength so that I will be able to stay on this drug for a lifetime because I have so many things I still have yet to accomplish and so badly want to.

Let’s go!

Live your dreams and love your life.

Andy